Guest guest Posted October 31, 2005 Report Share Posted October 31, 2005 > BTW, the mito cocktail has done more for this child's > psychiatric issues than any psychiatric medicine ever did. > > This is great news. I hope that means your son is also seeing that he is improving and more willing to take the mito cocktail. Certainly a beneficial side effect for beleaguered parents. :-) Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2005 Report Share Posted October 31, 2005 Yes, I certainly wouldn't try to sort out multiple deficiencies in the complexes as to which is primary or secondary. Way over my head. Logic might suggest that the most profound deficiency would be the primary one, but apparently that isn't always true either. Do you know if Cohen or Shoffner have looked outside the respiratory chain complexes in your case and assayed any enzymes in beta ox? I know you had CPT measured years ago, but I wondered if more recently they have pursued documenting any secondary dysfunction in fat metabolism? Beyond measuring beta ox enzyme activity, I've forgotten what additional biochemical markers were seen in these other OXPHOS cases that pointed to a secondary problem with fat metabolism. I think typical diagnostic patterns for beta ox in organic acids---but more complicated than that. It's ALWAYS more complicated.....:-) Barbara > Barbara > > My complex II and III are also lower than the normal range, but not 0 as is I. > > This was a second live biopsie done in Cleveland and first was done in > Atlanta. They were about 4 years apart. One thing that was noted is > that each of the labs and docs uses a different percentage for > determining if it is significant. They also don't know if II and III > are secondary to I or even the other way around. Dr. Hoppel seemed to > think I and II were secondary to III. Who knows - just have to wait > until more research discovers more info. > > laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2005 Report Share Posted October 31, 2005 --- Barbara Seaman wheatchild@...> wrote: > This is great news. I hope that means your son is > also seeing that he is > improving and more willing to take the mito > cocktail. Certainly a beneficial > side effect for beleaguered parents. :-) > Actually, this is just more proof to him that there's nothing really wrong with him. I just get really mean at times (when he's not on meds) and somehow get nicer when he's on meds. Of course he doesn't notice that he's always angry with somebody off meds. Mom to the two best kids in the world! http://www.caringbridge.org/visit/thomasandkatie __________________________________ Yahoo! FareChase: Search multiple travel sites in one click. http://farechase.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2005 Report Share Posted October 31, 2005 I wondered about the usefulness of the UMDF list myself because neither of the doctors who they mentioned for my area were doctors that any patient had ever told me they went to. Wasn't sure if it was just because I didn't know that many people with mito, but no one in this group mentioned those docs when I asked. > >Have people found that the UMDF list of doctors (they have one, > >right?) is helpful, or are they mostly pediatric? I did find out > >that the genetics clinic at CHOP would see adults, but I ended up > >going to NEMC instead. > > > >I see you are in IL, have you tried Northwestern, U Chicago, and Rush? > > > >Take care, > >RH > > > > > > > >Joanne Kocourek (mom to , lies, and ) > >visit us at: http://www.caringbridge.org/il/annakris > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2005 Report Share Posted October 31, 2005 The list that UMDF has is NOT a list of recommended docs. It is a list that either docs them self have asked to be added to or patients of those docs have asked to be added to. I don't think UMDF even has a clue who most of the docs on the list are. Joanne Kocourek wrote: >The UMDF list for the Midwest is sparse and most of those listed either admit they have an " interest in mito but NO true knowledge or expertice " . We have actually seen two of those listed and the results have been awful (because of their lack of knowledge and ignorance giving us the same old maybe psych or it can't be type statements). The only families that have had success with Ruch or Northwestern have confirmed, common genetic abnormalities, ie MELAS, MERRF, etc. I work at U of C and the situation here is worse, with many family dismissed as MSBP. The few they have diagnosed have NOT been offered any treatment as " there is NO treatment or cure. " THe local MDA Clinics didn't even understand that Mito was under their umbrella,. When I finally convinced the coordinator they decided my girls were too medically fragile and complex and they couldn't service them. Note: One of the docs on the original UMDF list accused our family and at least 5 others of MSBP even though we all > have children with biopsy confirmed disease. > >Almost all of their medical care is based at Children's Hospital of Wisconsin. They have, by far, they most experience with mito in the region. My daughters are followed by over 8 subspecialties there. We drive from the Illinois side of the Northwestern Indiana border to get there, approximately 2 1/2 to 3 1/2 hours drive time. > >ohgminion rakshasis@...> wrote: >Have people found that the UMDF list of doctors (they have one, >right?) is helpful, or are they mostly pediatric? I did find out >that the genetics clinic at CHOP would see adults, but I ended up >going to NEMC instead. > >I see you are in IL, have you tried Northwestern, U Chicago, and Rush? > >Take care, >RH > > > >Joanne Kocourek (mom to , lies, and ) >visit us at: http://www.caringbridge.org/il/annakris > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2005 Report Share Posted October 31, 2005 --- shaynapearl happyclam8@...> wrote: > I wondered about the usefulness of the UMDF list > myself because > neither of the doctors who they mentioned for my > area were doctors > that any patient had ever told me they went to. > There is a person I know of who has given names for the UMDF list. She lives in IL and has a known genetic defect. She thinks that her docs are wonderful. Well, she's one of the very few mito patients with a known defect. Doctors can diagnose her because it only involves a blood test. Because she has processing issues common to mito, she does not understand when you state that the docs listed around us are worthless to us. The resouce lists are not exactly researched or exhausitive lists. Mom to the two best kids in the world! http://www.caringbridge.org/visit/thomasandkatie __________________________________ Yahoo! Mail - PC Magazine Editors' Choice 2005 http://mail.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2005 Report Share Posted November 1, 2005 > BTW, the mito cocktail has done more for this child's > psychiatric issues than any psychiatric medicine ever did. I agree with that, I have a lot of psych issues (labile emotions, anger for no reason, confusion) that resolve well with either my mito cocktail or medicine I take for high ammonia (maybe not due to mito, but metabolic in some way). The problem with psychiatrists is that they are like priests - they have to believe " their religion " , that psych treatment through therapy or drugs are the only answers. They don't seem to realize it isn't " being ill " dragging us down in our minds, it's that being ill directly changes the neurotransmitters etc. I think medical doctors seem more open to the possibility of a non-medical or supplement treatment than psychiatrists/psychologists. Thank goodness I didn't take Prozac when prescribed, I had self- destructive/suicidal behavior as a teenager, and my prescription was given before the risk of Prozac and suicide was in the news... Take care, RH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2005 Report Share Posted November 1, 2005 > Actually, this is just more proof to him that there's > nothing really wrong with him. I just get really mean > at times (when he's not on meds) and somehow get nicer > when he's on meds. Of course he doesn't notice that > he's always angry with somebody off meds. If he is " fine " when on the meds, I think it could be okay if he thinks nothing is wrong with him, *as long as he takes* the meds. I know people who have kids with diabetes, where it is as plain as apple pie that they do have something going on, and invariably they go through a " nothing is wrong with me " phase and learn their lesson. I try to deal with my son, who unfortunately has hypoglycemia and other issue, by telling him to take a snack with him, and if he needs it, it is there. I sometimes forget to take my own meds on time, and my body reminds me to take them. Perhaps your son will get to that point, that he realizes feeling better is favored over feeling crappy, whether or not you guys can argue over whether he is sick. My own feeling is that if I am angry for no reason, people would want me to get psych therapy (and take away my kids), and I'd hate that, so I'd better take my meds LOL! Take care, RH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2005 Report Share Posted November 1, 2005 I'm not 100% sure where to find the doctor list on the UMDF site, could you point me to it? Also, I found that the UMDF has a Scientific Advisory Board, that might be a better resource for doctors who really know about mito? Even if they are only researchers, they might know some good clinical doctors (or am I totally off base here)... Take care, RH > > >Have people found that the UMDF list of doctors (they have one, > > >right?) is helpful, or are they mostly pediatric? I did find out > > >that the genetics clinic at CHOP would see adults, but I ended up > > >going to NEMC instead. > > > > > >I see you are in IL, have you tried Northwestern, U Chicago, and > Rush? > > > > > >Take care, > > >RH > > > > > > > > > > > >Joanne Kocourek (mom to , lies, and ) > > >visit us at: http://www.caringbridge.org/il/annakris > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.